An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

Ariane Quintal   ^{1, 2, 3} , PhD ;   Isabelle Carreau   ^{3 *} , BA, MA ;   Annie-Danielle Grenier   ^{3 *} , BSc ;   Caroline Hébert   ^{3 *} ;   Christine Yergeau   ^{3, 4 *} , MSc ;   Yves Berthiaume   ^{3, 5 *} , MD ;   Eric Racine   ^{1, 2, 3, 5, 6, 7} , PhD

¹ Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, Montréal, QC, Canada

² Département de médecine sociale et préventive, Université de Montréal, Montréal, QC, Canada

³ Ethics and Rare Diseases Working Group, Institut de recherches cliniques de Montréal, Montréal, QC, Canada

⁴ Regroupement québécois des maladies orphelines, Sherbrooke, QC, Canada

⁵ Département de médecine, Université de Montréal, Montréal, QC, Canada

⁶ Division of Experimental Medicine, Department of Medicine, McGill University, Montréal, QC, Canada

⁷ Department of Neurology and Neurosurgery, McGill University, Montréal, QC, Canada

*these authors contributed equally